Editor’s Note – While I faced the typical and predictable challenges to body, mind and spirit all PRP patients face, there was one major exception: the workplace. I was retired when the “Red Bastard” came knocking on my door in August 2012

Every PRP journey is unique. For many PRP patients the onset of pityriasis rubra pilaris comes when we are employed. The decision to work or not to work is the patient’s choice subject to the realities of the workplace..

Over the past eight years I have heard hundreds of PRP workplace stories. While there are common issues, I would submit that each tale is as unique as each PRP patient’s journey.

The decision to continue working or not is the patient’s choice subject to the realities of the workplace and effects of PRP.

Tales to be Told

On February 14, 2019, Pam A, an optometrist living in Devon, England posted a workplace-related question to the PRP Facebook Support Group. She wanted to know how fellow PRP patients were able to continue working and, if they stopped, what was the reason.

The 69 comments to her post was a reminder that we should gather workplace stories to share with our global community. There are two basic story lines:

❇ï¸Ž Patients who no longer have the physical capacity to perform the duties for which they were hired. How did that reality impact the PRP journey?

❇ï¸Ž Patients who have decided that they can perform. Individual but must convince a third party.

Respondents to the workplace post are just the tip of an iceberg. While they have been been memorized in the PRP Survival Guide, this should only be the start.

To Work or Not to Work
For some the onset of PRP is so ferocious and relentless that the idea of working is simply not a viable option. Others, for whatever reason, usually financial, make a commitment to stay on the job. The loss of income can be catastrophic. Tell us your workplace story.

❇ï¸Ž What were the obstacles?
❇ï¸Ž Who were your champions?
❇ï¸Ž What resources were helpful?
❇ï¸Ž What lessons did you learn?
❇ï¸Ž What advice would give?
❇ï¸Ž Would you do it again?

PRP patients face a myriad of challenges of body, mind and spirit. Those who are employed at the time of onset may or may not be able to handle the workplace. On February 14, 2019, Pam A (Devon, England), an optometrist asked the following:

Can I ask how long into this journey you have to stop working and the reason why. Is it the treatment or feet or face or tiredness? I am getting through one day at a time reapplying emollients during day. Sleeping tablets help at night. I don’t know if I am going to get worse. Does everyone face the same problem?

Here is a sampling of the response.

SOCIAL WORKER

Martin W (Wolverhampton, England) – I had to give up work at around two months in and didn’t go back for a year and a half. I couldn’t walk or use my hands properly. Once it took a hold of me I had to stop work as I couldn’t physically do it. I was misdiagnosed for six months as it just got worse. I have never been able to fathom this illness. It seems to act in different ways and also for varying lengths of time. All I know is that it gets worse before it gets better and we have to hope ours won’t be too bad. Mine has been two and a half years but I feel almost well now.

PAYROLL & TAX (TELECOMMUTING)

Kelli G (Huntington Beach, California) – I was able to work. But thank god I can work from home. I wasn’t always in the mood to leave my house and have people see my skin. I work in the payroll/tax industry, specializing in US and Canadian corporations. I have the best boss ever. He’s in Florida and I’m in California. I technically should go to an office but I handle my tasks so he’s cool with me being virtual.

PERSONAL ASSISTANT – ADMINISTRATIVE

Lisa F (Gering, Nebraska) – I made it for several months before I had to stop working due to feet and hands splitting open. Couldn’t even open our milk lid 🙁

JOB TITLE REQUESTED

Linda B (Shropshire, England) – I was signed off as unfit for work by my GP during the second month of the disease when I was in the acute stage. My first return to work was after 2.5 months, but unfortunately my condition relapsed, and I was signed off sick again 4 months later. My second return to work was after a further 6 weeks off work sick, and once again my condition was very unstable, but I managed to hang in there in the workplace, although it was very heavy going. In my experience the first 18 months with the disease are the most difficult, and it’s about baby steps.

JOB TITLE REQUESTED

Elle W (Yorkshire, England) – My husband continued to work but found it hard at times. Red swollen dry face, shedding skin everywhere he went, gloves on hands and wrap on feet made it difficult to walk and use his hands – both would split easily, exhaustion, embarrassed and self conscious around people. Some days just the effort to get out the door with the washing, creams etc etc was really difficult. We kept saying ‘just one day at a time’, if he needed to stop we would deal with it. Then things started to improve slightly, less shedding, face looked more like himself, eventually the wrap on feet came off, no more gloves, nails better. He is 13 months in now. Not completely better but huge improvement to the acute phase. Hope you manage to keep up the things you love.

OFFICE MANAGER

Karen A (Sarasota, Florida) – I’m a little over 5 yrs into this and about 95% covered. Still managing to work but it has been extremely difficult . I didn’t have a choice to not work for I needed my full pay and benefits. In another plateau by working it kept my mind off of myself. Take it one day at a time and all the best to you. I am front and center and oversee all office functions for a real estate company. I process all files and oversee the office. 2 computer monitors etc. fun and very busy. I walk at least 1.5 miles
In the office with my feet. I do have a handicap sticker which helps. The hardest thing is my hands and fingers and the redness and shedding and eyes. I’m a survivor and it will get better.I wear my gloves and work on a computer all day. Some days the pain is bad but ….

ADMINISTRATIVE – LICENSE & PERMITS

Deidre H (Houlma, LA) – \I had to give up working in December 2016. I would say it’s pretty much everything. Feet, hands, fatigue. The whole body plus the meds didn’t help. I worked for SAIA Motor Freight for almost thirty years and I did the License and Permits for all the trucks and trailers. It was a lot of paperwork and strenuous labor when sending out license plates and permits for all equipment.

JOB TITLE REQUESTED

Jean N (Danvers, Massachusetts) – I am really wondering if fatigue ever ends. I was doing really well for a few weeks during the holiday but now I am so fatigued I feel like a truck hit me. Will it ever end. I am so weary. I had a taste of my life back and I am so sick of this PRP. Sorry for the rant as I have had a few very bad days.

STOREMAN

David H (Scottsdale, Tasmania, Australia) – I worked for 5 months into the disease. But I had a job where I was on my feet all day and just couldn’t do it anymore. That was April 2016 and I am still not working.

JOB TITLE REQUESTED

Steve B (Cambridge, England) – PRP affects us all differently (apart from the ubiquitous red, flakey skin!) including its severity and everyone has their own unique experience of this horrible disease. For me I managed to keep working but came very close to having to stop when it became too painful to walk more than a few steps or sit in my car and drive to work due to badly inflamed legs. For many the worst is the “acute” phase when the redness has spread to its full extent and everything is swollen, peeling, itching/burning and feeling generally uncomfortable and tired. However that is also the point when it starts to improve.

RESTAURANT OWNER/GENERAL MANAGER

Randy R – Yankton, South Dakota) I was a restaurant owner general manager working 6- 7 days a week. I was not the best Manager for a while. I got through it but my business suffered and I closed down Eventually. I was able to work but not at full capacity. Working with the public is difficult. Shedding of skin in a restaurant isn’t very nice. The heat in Kitchen was unbearable. I couldn’t sweat . I would go in freezer to cool off. I got though it with help of my wife who I worked with. During the process I lost a great deal of profit in business and my self esteem suffered immensely. I now am a pizza delivery expert. With alot of debt to the clinic. I am so happy that I am in remission and lucky to have what I have.

FLIGHT ATTENDANT

Susan R (Missing Location) – I am a flight attendant and haven’t worked since March 2018. I have been on Acitretin since Sept. it does and will get better. I still have fatigue. My feet and hands bother me, burning and pain, but that was the last place it went to. My skin reacts to mostly all clothes. So I can’t wear my uniform or certain clothing. I have had this since Oct 2017 and broke out over 90% of my body by March 2018. Best of luck in this journey. Keep the faith and take the help and support when needed.

NURSE PRACTITIONER

Kathy D (Denison, Texas) – I think we are all different. I have continued to work and take one day at a time. Some days it’s my eyes that are so dry it is hard to see so constantly putting drops in, some days it’s the itching or the constant body aches and some days I can handle all the dryness and constantly moisturizing. I wish you the best of luck! Take one day at a time!

CHAUFFEUR

Stewart L (Hampshire, England) – I was able to work for the first month to 6 week since I noticed symptoms and the eyes and tiredness took me out I was a airport driver and I could not see the road with out treating eyes every 30 mind not ideal when main airports 1 and half hours away with out traffic. And tiredness ment I could just fall asleep. So stopped working. Closed my company . Got on depression meds early to be one step ahead of the game but now I’m on some strange drugs. Acute stage was horrible and even now i can’t face going anywesr

HEALTHCARE

Monica L (Missing Location) – 2018 lost job worked for three doctors face was almost purple and then it started all over body, stop taken actaine got nervous that it was coming back cuz breaking out in places that wasn’t before not as much scaling that is so frustrating! Can’t keep clothes on wear loose clothing even to this day, actually on a good day only good for maybe couple hrs without nap and lub up again

NURSE – MANAGEMENT POSITION

Patricia M (Melbourne, Victoria, Australia) – I am a nurse in a management position .I am fortunate have been able to take sick leave because Of the erythema itch ,not sleeping and overwhelming fatigue and “Fog .” I have always told my team they need to look after themselves if they want to care for others . I have finally taken my own advice ….. but as you see from all the replies everyone is in a different situation.

NURSE PRACTITIONER

Karen G (Palo Alto, California) – I’m a psychotherapist in private practice. I had to stop work for 7 weeks because I was so swollen and 95% covered, red, and in extreme pain and itch. When my face cleared and I could get socks to fit, I went back to work for a few hours. Phone sessions with clients was helpful

PROFESSIONAL MUSICIAN

David K (New York City, New York) – I’m a musician. I can’t even [ick up my guitar let alone play it.

TEACHER, JUVENILE CORRECTIONS CENTER

Kathy F (St. Anthony, Idaho) – Just take one day at a time. I have worked through out the ordeal. I was pretty severe! Most days I had to rock back and forth to endure the pain . Everyone is different. I wish you well. I am a teacher at a juvenile corrections center and my coworkers and supervisor have been supportive. I am lucky in that regard

ENTREPRENEUR –ONLINE BUSINESSS

Beth R (Bristol, England) – I run a small online business. I used to work from an office but bought it home as the condition took hold. I couldn’t have worked away from home in the early months as I was having to grease up with ointments every 20-30 mins for months. I had this condition 20 years ago when things were harder. I had to work otherwise I would have had no income for food and rent and no entitlement for help – so I soldiered on. It was a nightmare of a time but I was in my 20s so I was otherwise strong and I did it because I had no other option. My boss gave me late shifts which helped – but I would be on my knees on the way home and then just collapse on the bed when I got home.

Do you have a workplace story to tell?

Editor’s Note: Workplace stories don’t begin with “Once upon a time.” They begin with: “It was a dark and stormy night….” As you read these “snippets”, imagine a more complete recounting of your workplace story.

If the prospect of writing a workplace- or work-related story sends a shiver down your spine, all you may need is a little help from a few friends – all members of the PRP Facebook Support Group. Click Ghost Writer to learn more.

For some the onset of PRP is so ferocious and relentless that the idea of working is simply not a viable option. Others, for whatever reason, usually financial, make a commitment to stay on the job. The loss of income can be catastrophic. Tell us your workplace story.

❇ï¸Ž What were the obstacles?
❇ï¸Ž Who were your champions?
❇ï¸Ž What resources helped?
❇ï¸Ž What lessons were learned?
❇ï¸Ž What advice would give?
❇ï¸Ž Would you do it again?

Let us help you tell your story. LEARN MORE